CDC's response back 14/8/2010 to my questions

I just got another email from the CDC.. they want to talk to me! **kind of unnerving phones as i make a mess of that due to my poor concentration and foggy head**

At this point not sure how to best handle this.. i do know i WANT some proper answers and will persist till we get them.

Guys and girls.. please email me any questions they should be asked when they ring. They seem to be taking my email very seriously. (wondering if they saw i'd posted it here with the poor response we got)

Thank you for your inquiry to CDC-INFO. In response to your request for information on on the neurologic and muscular signs which distinguishchronic fatigue syndrome (CFS) from myalgic encephalomyelitis (ME), which we replied to on Friday, August 13, 2010. We forwarded a copy of your inquiry to CDC and are pleased to provide the following additional information from the program:

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anyone know what the CDC means when they say "the program"

Any links provided to non-Federal organizations are provided solely as a service to our users. These links do not constitute an endorsement of these organizations or their programs by CDC or the Federal Government, and none should be inferred. The CDC is not responsible for the content of the individual organization web pages found at these links.

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i think we all realised that when they sent me the first email back.. The CDC is not responsible for the info on any of the links they sent me before in regards to my query
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Could they be about to shift and suddenly be all cooperative with CFS/ME patients?? and this is why they want to ring me and give me the info i was seeking???

I think the CDC is going to have to answer for years of neglect. I was just reading a newsletter authored by Dr. David Bell, the doctor who treated so many patients in New York.

There are some great quotes in this newletter!

Volume 7, Number 2: August 2010

Information and Support for the ME/CFS/FM Community
David S. Bell MD, FAAP, Editor

XMRV Update

There is so much to update, while at the same time almost nothing is happening on the outside. Except of course the CDC can't find XMRV in CFS, and it is directing the NIH XMRV conference in early September on how to find it. It seems that Dr. Harvey Alter can find it, but his paper was held after being accepted by the very prestigious journal PNAS. Very strange happenings, and I hope that someone is keeping a very accurate diary of all this.

Of those persons who read this, most of you follow the news carefully, so I will not dwell on it too much. But it has been publicly announced that the NIH is funding an xmrv grant on the Lyndonville outbreak. So we will stay busy.

In case you missed some of the news.lets see. New York Times article by David Tuller on July 14, 2010 quotes Hillary Johnson as saying, A cabal of top government administrators with a habit of heavy-handed, anti-science manipulation of peer-reviewed science ordered the delay of Dr. Harvey Alter's study. It is always exciting to see what is on Hillary Johnsons web site: Osler's Web.

Look up Dr. Suzanne Vernon's comments about the CDC study at the CFIDS Association web site. She blasts the CDC study as being poor. She used to work for them.

Having no inside information whatsoever about the CDC, here are my speculations. On the overly optimistic, (lets give them a break side) maybe the CDC did several studies. First was a simple PCR study just like the three other negative studies involving hundreds of tired people gained from a telephone interview or two, and no XMRV is to be found. Note: of the four published studies, none have tried to replicate Mikovits work. This is very important. It is now clear that if they do several thousand more PCR studies without trying to replicate the WPI work, they will not find it. Time to move on. Try replicating the WPI study and learn something.

But maybe the CDC is also doing other studies, open minded as they are, and finding it all over the place. Finding it in some controls, the blood supply, and in lots of persons with CFS. Maybe they are stalling in order to gear up for a major assault on CFS and XMRV with clinical trials, serious research, and so on. Maybe just maybe.

On the negative side, perhaps there is an organized effort to marginalize XMRV, even if it is the cause of CFS, because it may be expensive to treat. We know that this has been done before, with the excuse being "good science". Personally, I would insist on good science, but not political science. Lets find out what is there. If XMRV is marginalized, it will be no more visible to mainstream medical practitioners than the 2'-5' A synthetase, RNAse L, blood volume, isoprostanes, IVRT, natural killer cell data, immune upregulation, and the many other good science that has been done on CFS. It is all meaningless if the patients never get to see the benefit of this science.

And perhaps most importantly, the Whittemore-Peterson Institute will open next week. For anyone who has been discouraged in the past about the lack of progress, this should be a shot in the arm.

Research Group News

I would like to thank the research group for its work and all of you for supporting the group financially. As I mentioned above, we have an NIH grant, and I am a consultant to this grant. As such, I will receive no funds from the NIH for this, and I am perfectly OK with that. All the preliminary data accrued came from your generosity. Your contributions, through Connecticut CFIDS Assn or otherwise, have paid for mailing of questionnaires, blood collection supplies, travel to conferences for myself, statistical help, and pizza for the meetings. So far I have not embezzled funds for a new kidney-bean swimming pool, and have no intentions to do that in the future. The expensive stuff, meaning the XMRV assays, have been paid for from other sources. So we here in Lyndonville are doing just fine. If there are a lot more conferences, that will be good, because it means that there is positive news to report. If that happens, we may need some support.

Are there new studies in the works? At this point we are quite busy although nothing has shown to the outside world. We did get an NIH grant and that requires pilot data however. My hopes for the future would be to do a comprehensive pediatric study with many of the known researchers sending samples from children and adolescents as well as controls, and possibly a comprehensive neurologic study on the neurological symptoms present in persons positive for XMRV. These studies are way off in the future, and the NIH funding process, if it happens at all is very slow. These studies cannot be done by the research funds petty cash. They are major cash. So if anyone has $100,000 and wants to do one of these, let me know

Diagnostic Criteria for XAND

Assuming that research on XMRV really gets going, and it is found to be at the root of CFS in a majority of cases, listed below is my version of the Cadillac diagnostic work-up for CFS or rather, XAND, Xmrv Associated Neuro-immune Disease.

1. History and Physical Examination

As the basis for all good clinical medicine, the starting point is a good history and clinical exam. It is also the starting point for a constructive, provider-patient relationship. At some point effective treatments will be more widely known, but they cannot take place without a good relationship with your provider.

2. Test for XMRV

At this point in history we do not know the best and most accurate test for XMRV, and it has not been proven to my satisfaction that XMRV is the cause of CFS. However, it is my educated guess that XMRV can be found and that it will turn out to be the cause of this disease. The decision here is based upon how you will use the information, and the expense, as medical insurance will not pay for it.

Superoxide dismutase (SOD) catalase (Cat) and the ratio of reduced to oxidized glutathione are three enzyme systems that are tasked to treat oxidative stress. If XMRV is the cause of CFS, FM and other related illnesses, it does so by creating massive oxidative stress by knocking out one or more of these enzymes. Their levels can be measured with a blood test in several laboratories. However, again, insurance will not pay for them and your provider may not have heard of them. While still not proven, it is my guess that levels of these enzymes will turn out to be an effective future marker to have if treatment should be attempted.

4. Blood, urine levels of Isoprostanes

Isoprostanes are a measure of oxidative stress and may be the link with the proven reduction of circulating blood volume.

5. ATP production

ATP production is the bottom line, and we need more studies like the Myhill, Booth, McLaren-Howard study which showed abnormalities in ATP production. Like the other suggestions above, a clinically practical test which will be covered by insurance is not available at the present time.

6. Echocardiogram with cardiac output while standing and IVRT interrogation with oxygen

While not published yet in the medical literature, Dr. Cheney's work here should be replicated. The echocardiogram is available, cheap and readily available.

There are many other tests that can be used to prove the organic nature of CFS: 2'-5'A Synthetase, RNAse L, Natural Killer Cell analysis, cytokine profiles, anaerobic threshold exercise testing. The fact that persons are still told that there are no approved tests for CFS (see CDC website) is intolerable. Many people with severe CFS are deprived of disability because courts are following the suggestions of the CDC. Thus you become unable to "prove" that you are ill, even if you are bedridden.

Responsible and Irresponsible Medicine

The above suggestions as to criteria to diagnose XAND are easily dismissed as irresponsible, bad medicine. Modern medicine is based upon good, proven science - not speculation. Placebo therapies are no longer acceptable. And it is not acceptable to falsely raise people's hopes with bogus science. I agree with this 100%. But this process in CFS has gone off track.

Science will be done only if it is adequately funded. A researcher has to feed his or her family. And the funding agencies generally will fund those studies that prove what they already believe. If you believe that CFS is not "real," you will not vote to fund a study that investigates a hypothesis regarding medical physiology in CFS. It would be a waste of money.

Medical politics can and will marginalize and stigmatize certain areas in order to keep control of the process. Furthermore, while an open mind is the goal of a scientist, it is rare.

We need to change the scientific process. We should not discipline providers who, in good faith, treat their patients differently than "mainstream" providers do. Patients are not stupid. We need to loosen our grip on those advances that fall outside of the convenient. The good studies on CFS need to be shared in medical education conferences. Now you only see conferences talking about diabetes and high blood pressure. And this is because the conferences are meant to be easy and are funded by drug companies.

I once found that a medication I was using to treat CFS had a placebo effect. I found it by doing an inexpensive double blind trial. My patients did feel better but only because I was taking them seriously and trying to help. That is not false hope. After the study, I told them that the medication wasn't helping them. They managed to deal well with the news.

But the process of proven-only treatments has gone overboard. There are some things that probably help. But we do not know because the process has discarded patients with CFS. It is too expensive, it is difficult to define, what subtypes do you want to study? And so on. No industry is going to fund a study on high dose vitamin B12, because that drug is generic and not patent protected.

Attempting seriously to get to the bottom of CFS is not false hope. I challenge those who discriminate against and disrespect CFS to make accusations of irresponsible medicine.

Superoxide dismutase (SOD) catalase (Cat) and the ratio of reduced to oxidized glutathione are three enzyme systems that are tasked to treat oxidative stress. If XMRV is the cause of CFS, FM and other related illnesses, it does so by creating massive oxidative stress by knocking out one or more of these enzymes.

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This is interesting. Thank you JT1024 for posting this very interesting article by Dr Bell. Regarding the above quote, I am XMRV+ and have a low Superoxide Dismutase (SODASE) function, and low Glutathione Peroxidase. Maybe this is linked to what Dr Bell said?

If anyone is interested about Oxidative Stress, in Europe you can get assays from REDLABS in Belgium who also do an XMRV culture test (licensed from WPI/VIPDX in America).

I'm yet to find any lab than can offer F2 Isoprostanes to the public though, and these are raised in ME/CFS and cause vasoconstriction affecting the lungs that maybe, could explain some reason for the shortness of breath in this disease after exercise. (Not just during, but after also). E.g Inflammatory/Immune induced post exertional shortness of breath. Hopefully a lab, somewhere, will offer this test in the future.

Ironically, the CDC advise exercise as a treatment for ME/CFS yet this worsens oxidative stress, (linked to XMRV by Dr Bell) and hopefully provable soon.

I just got another email from the CDC.. they want to talk to me!
Guys and girls.. please email me any questions they should be asked when they ring. They seem to be taking my email very seriously. (wondering if they saw i'd posted it here with the poor response we got)

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I would like to know more about those muscular and neurological symptoms of ME and what tests they will recommend to diagnose ME muscular and neurological symptoms.

Are they planning on differentiating between CFS and ME? Is ME going to be connected to XMRV and CFS is not? Are they ging to claim CFS is psychosomatic and ME is not?

If XMRV is found to be connected to CFS by the NIH/FDA paper , what will be their next step? Will they be recommending diagnostic tests and treatment to doctors right away or will they insist on many more years of research before they do so?